I suppose the story begins when I first developed the symptoms of diabetes, at age 35.
With the usual gusto I had reserved for learning new skills like scuba diving and computer programming, I set out to learn everything about diabetes and its treatment. I figured that if I took very good care of myself, ate a controlled diet, sought out the best medical advice and care … well, then I could reverse my fate. Maybe even enjoy a dinner out now and then, maybe even have some chocolate. And I would certainly avoid all those nasty complications.
For two years I did it all, and was rewarded by a 30 pound weight loss, an enviable daily exercise routine and what I was told was excellent blood sugar control. But I was fanatical. I was a type 2 diabetic, not on oral medications, and I tested my blood sugars two or three times a day to see what would happen to it when I exercised, ate, missed a meal, etc. I accepted and even welcomed this controllable disease.
Welcomed it? Because of the desire to avoid the dire long-term complications of blindness, gangrene, kidney failure and impotence, I was in terrific shape, eating and sleeping well, and enjoying a perfectly normal life, just without chocolate. Friends asked me lots of questions – it seemed that almost everyone had a relative with diabetes. I enjoyed sharing my new found knowledge.
Then some problems developed. I began a minimal dose of oral medication once a day. I began developing some odd pains that defied diagnosis. My normally well controlled blood sugar began to skyrocket. I couldn’t sleep, my thirst was phenomenal, my emotional state was a wreck. I was irritable much of the time, I couldn’t really think clearly, my skin was dry and cuts were slow to heal.
My doctor figured I must have an infection, but my white cell count was normal. I began a series of treatments with increasingly expensive and potent antibiotics. I developed what was believed to be an abcess. I was referred to a diabetologist whose first thought was to start me on insulin. “Maybe just until we can give your body a chance to heal,” he told me. “Heal what?” I asked.
I began to take almost 60 units of insulin a day. I also started taking regular insulin. Regular insulin works quickly and lasts for up to six hours, NPH or Lente insulin is longer-acting insulin. I was mixing the two in the morning and injecting one or the other two or three times a day. During the next few months my blood sugars were reasonably well controlled, but my glycosolated hemoglobin test (a check for overall blood sugars during the previous 90 days) was 14 percent and the normal high was seven percent. Something was wrong.
One of the things that bothers me the most about doctors is that while the better ones do try to educate their patients, their time is limited. And to whom do you ask all the myriad little questions about self-care? Books barely scratched the surface of what I wanted to know. How can I adjust my own insulin? What was the magic formula for deciding how much regular and how much NPH to use? What really were my blood sugars supposed to be anyway? Why wasn’t my glycosolated hemoglobin test normal if my fasting and pre-dinner sugars were 120 or less? And who would know what I should do with my insulin on my planned and paid for scuba diving trip in August?
So at the recommendation of several friends, I called Peggy Huang, the UCSF Diabetes Educator. She actually answered her own phone, and I asked about the courses offered at the her Diabetes Teaching Center.
There were seven diabetics, two spouses and two visiting nurses in my weekend class. I arrived full of insulin and my tried and true breakfast of shredded wheat, brans, skim milk and a bit of fruit. We tested our blood sugar six or more times a day. I had used insulin for seven months and had been testing for five years. This made me an old hand at it compared to the three group members who were just put on insulin a few weeks earlier.
Peggy was already familiar with our diabetes histories, and she reviewed our current doses. She told me to cut my morning dose in half! I was barely in control as it was. Apparently there is recent evidence that the typically prescribed dosage ratio of Regular and NPH is often too high. By the time I tested again, my sugar would be high and I would add more regular insulin. My morning insulin went from 39 units to 20 units (10 R + 10 NPH). As the day’s lectures progressed my sugars were fine!
Peggy and Jeannine, her assistant, knew about all the local places to buy supplies and ways in which we could best use and afford them. We ate lunch together and the dietician gave us sensible plans for learning the exchange lists. By eating together we were able to compare notes and observe what the others chose to eat. (Still no chocolate.)
When we left late in the afternoon, we were given our dinner and bedtime dosages. In the morning my sugar was terrific! And this on half the total insulin I was used to taking. Imagine that a few drops less insulin every day would make my control so much easier! And I also benefited from taking several injections a day to more naturally simulate the body’s insulin. I hadn’t felt this good in many months.
What was going on? I was seeing a very fine doctor, and yet in one day my insulin had been decreased by 50 percent and the results were extremely positive. I was ecstatic. I was also mystified.
Everyone in the group finished the class in much better control and had a real handle on how to manage their day to day diabetes requirements. The class covered all the necessary information about self-care, excercise, diet and also addressed practical issues of interest to the entire familiy. One wife realized that the sudden temper outbursts of her husband were a symptom of his diabetes. Apparently out of control blood sugars cause irritability and other emotional augmentation, not unlike what happens to some people after years of alcoholic drinking.
I still don’t have a clear idea of what caused the original pains and problems, and I am still on insulin, but I am in far better control. I was able to switch to a regime of all regular insulin three times a day with NPH at night while scuba diving. The added exercise plus testing my blood sugar just before diving put me in excellent control. I certainly didn’t want a low blood sugar while I was underwater. My goal of heading off long term complications remains rooted in my daily habits. And now I feel so much better.
By integrating actual patient profiles and new research, the class made clear to me that even the most well thought out treatment plan ought to be open to review and given the latest information.